Go to Home Page
Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery
  Username:    Password:      Remember me       
MICROSCOPIC COLITIS SUPPORT Forum Index

You can get your life back
MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

Visit the Microscopic Colitis Foundation Website
 

The only comprehensive book ever written about Microscopic Colitis
 FAQFAQ  RulesRules   SearchSearch   MemberlistMemberlist   UsergroupsUsergroups  ChatChat   RegisterRegister 
 ProfileProfile   Log in to check your private messagesLog in to check your private messages   Log inLog in 
 World Time Clock--Time ZonesPotty People T-ShirtsPrivacy Policy
Google
SearchSearch The Archives of This Discussion Board
In Memory Of Sally Read
Goto page Previous  1, 2
 
This forum is locked: you cannot post, reply to, or edit topics.   This topic is locked: you cannot edit posts or make replies.       MICROSCOPIC COLITIS SUPPORT Forum Index -> Our History and Mission
 View previous topic :: View next topic  
Author Message
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 29977
User's local time:
2017 May 28 - 4:29 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Dec 22, 2009 9:53 am    Post subject: Reply with quote

Polly,

Speaking of the Lotronex issue - I found an old post by Sally on another board, where she described her dilema, (I have no proof, of course, but I'm almost certain this was written by Sally):


Quote:
Irritable Bowel Syndrome - Lotronex and Collagenous Colitis
Expert: Verna Eileen Radcliffe - 7/30/2001

Question
I was diagnosed in December of 1999 with collagenous colitis. After my GI specialist prescribed numerous medications none of which worked, she finally prescribed Lotronex "off label." I had wonderful results with this medication and no bad side-effects other than slight constipation at the beginning which was easily controlled by lowering the dosage. The seven months that I was on Lotronex were the best I had in 9 years. Do you have any idea when or if Lotronex might be re-released? Without it, my symptoms have returned and I am forced to take large doses of prednisone to control frequent and painful diarrhea. Any encouragement would be appreciated.

Answer
Hello Sally,
Sorry to hear you're one of the hundreds of thousands who now suffer from the withdrawal of Lotronex from the market.

I personally believe that Lotronex will be re-released. This is based on my first hand knowledge of the efforts being made to see that this happens. If you would like to join in those efforts, i.e., email and snail mail letter writing and phone calls, visit The Lotronex Action Group website http://www.lotronexactiongroup.org Also visit the discussion forum about Lotronex at
http://www.ibsgroup.org/cgi-local/ubbcgi/Ultimate.cgi as well as Lotronex Central at www.geocities.com/lotronexcentral/ All of these sites can give you more support in coping with your condition and allowing you to feel there's someone who knows what you're talking about. There is also a petition online you can sign electronically (after reading it of course) and make comments if you wish. http://petitiononline.com/LOTRONEX/petition.html

Not everybody found relief with Lotronex but I'm glad you did. Hopefully when it's back on the market more Collagenous Colitis sufferers will be able to try it and more diarrhea predominant IBS sufferers will too.

Good luck,


From:

http://en.allexperts.com/q/Irritable-Bowel-Synd...enous-Colitis.htm
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Back to top
MaggieRedwings
King Penguin
King Penguin


Joined: 31 May 2005

Posts: 3865
User's local time:
2017 May 28 - 5:29 AM


Food Intolerances : Gluten, Soy, Eggs, Nightshades, Mushrooms, Bananas, Melons, Most Dairy, usually Citrus, Corn for the most part
Location: SE Pennsylvania

PostPosted: Tue Dec 22, 2009 1:25 pm    Post subject: Reply with quote

WELL HELLO CATHERINE!

I too so remember the board posts between you and Sally and really all of us. Those were the days but we have landed here on a great site and you are fondly remembered. I was sending Christmas cards when I got the email about Sally and having to not send one already written and addressed to her but so very difficult to do. So I didn't. I have it in my cards and will go into a memory box. What a lady she was. I also kept in touch with her and miss her so.

Hang around here, everyone will definitely enjoy your company.

Love, Maggie
_________________
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
Back to top
catherineanathan

United States

Joined: 21 Dec 2009

Posts: 4
User's local time:
2017 May 28 - 4:29 AM



Location: Hernando, MS

PostPosted: Tue Dec 22, 2009 4:25 pm    Post subject: Miss BN Reply with quote

barbaranoela
I remember you with great fondness! When you first started posting, the time you would take with your own special flourishes!!!

Do you know how old Sally was when she passed away??

And Miss BN, is your husband still living??

Much Love,
Catherine the Ripper
Back to top
catherineanathan

United States

Joined: 21 Dec 2009

Posts: 4
User's local time:
2017 May 28 - 4:29 AM



Location: Hernando, MS

PostPosted: Tue Dec 22, 2009 4:27 pm    Post subject: Hello! Reply with quote

MaggieRedwings
I always liked your "handle." There are 5 gazillion redwing blackbirds in the Mississippi Delta - part of my service area.

xoxo,
Catherine
Back to top
catherineanathan

United States

Joined: 21 Dec 2009

Posts: 4
User's local time:
2017 May 28 - 4:29 AM



Location: Hernando, MS

PostPosted: Tue Dec 22, 2009 4:30 pm    Post subject: Moderators Reply with quote

Polly
Glad to know you all are moderating "the board." It continues to be a VERY civil place!!! Keep up the good work! Sally set the tone - and y'all are following in her footsteps. Hard to comprehend her passing!!

Love,
Catherine the Ripper
Back to top
Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5117
User's local time:
2017 May 28 - 5:29 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Wed Dec 23, 2009 6:34 am    Post subject: Reply with quote

Catherine,

Sally was only 68. Much too young.

Love,

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Back to top
cludwig
Rockhopper Penguin
Rockhopper Penguin


Joined: 15 May 2006

Posts: 647
User's local time:
2017 May 28 - 2:29 AM


Food Intolerances : Gluten, casein, soy, egg, yeast, almond, lettuce, scallops
Location: Seattle

PostPosted: Mon Dec 28, 2009 4:33 pm    Post subject: Reply with quote

Hi Friends,

I did not know Sally, but I know what it feels like to have a stranger come into your life when you are feeling so sick and so weak and offer to be there for you during such an awful time. It is hard to find the type of kindness that I have found here from the potty people. So, for those who knew her, I am very sorry for your loss.

Love,
Cristi
Back to top
ant
Rockhopper Penguin
Rockhopper Penguin


Joined: 28 Jun 2009

Posts: 1676
User's local time:
2017 May 28 - 6:29 PM


Food Intolerances : Gluten, Diary, Soy, Corn, Eggs, Peanuts and other legumes, nightshades (e.g. tomatoes and potatoes). DX Osteopenia. Suspect Celiac - Genes Type: DQ2/DQ8

PostPosted: Tue Dec 29, 2009 6:34 am    Post subject: Reply with quote

Dear Cristi

Quote:
I did not know Sally, but I know what it feels like to have a stranger come into your life when you are feeling so sick and so weak and offer to be there for you during such an awful time. It is hard to find the type of kindness that I have found here from the potty people.


iagree So well put! All best, Ant
Back to top
artteacher
Rockhopper Penguin
Rockhopper Penguin


Joined: 24 Aug 2005

Posts: 725
User's local time:
2017 May 28 - 6:29 AM




PostPosted: Sat Jan 02, 2010 1:33 pm    Post subject: . Reply with quote

Oh so sad.

But how wonderful to be remembered for the work you did, and the difference you made in people's lives. And to be remembered for your spunk and resourcefulness, and most of all, graciousness. Words can't express how much it meant to me to get support and validation (and jokes) in dealing with MC.

Sincerely, Marsha
Back to top
Joyce
Little Blue Penguin
Little Blue Penguin


Joined: 13 Jun 2005

Posts: 46
User's local time:
2017 May 28 - 4:29 AM



Location: Garden Grove, California

PostPosted: Sat Jan 16, 2010 11:06 am    Post subject: Sorry To Hear This News Reply with quote

Hi,

I'm sure not many will remember me (except for Polly & Sally) It's Joyce who walks.
I have not been on this site for at least a year. Every so often I come on and check things out. When I saw this thread I couldn't believe what I read.
I'm so very grateful to Sally for starting this site. She was so kind and such a caring woman. When I needed to know that I wasn't the only one with this terrible disease and needed support she was there.
Sally thank you for all you have done for everyone and you will be missed very much by all.
Love,
Joyce
Back to top
Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5117
User's local time:
2017 May 28 - 5:29 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Mon Jan 18, 2010 1:58 pm    Post subject: Reply with quote

Hey there Joyce who Walks!

Of COURSE I remember you!!! How are you doing after all these years? The big question is: Are you still walking?

Love,

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Back to top
MaggieRedwings
King Penguin
King Penguin


Joined: 31 May 2005

Posts: 3865
User's local time:
2017 May 28 - 5:29 AM


Food Intolerances : Gluten, Soy, Eggs, Nightshades, Mushrooms, Bananas, Melons, Most Dairy, usually Citrus, Corn for the most part
Location: SE Pennsylvania

PostPosted: Wed Jan 20, 2010 10:19 am    Post subject: Reply with quote

Hi Joyce,

So nice to see a post from you - it has been way too long. I well remember you too and along with Polly, hope you are well and still walking. Sally was definitely a rock for us for many years.

Love, Maggie
_________________
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
Back to top
Display posts from previous:   
This forum is locked: you cannot post, reply to, or edit topics.      This topic is locked: you cannot edit posts or make replies.    MICROSCOPIC COLITIS SUPPORT Forum Index -> Our History and Mission All times are GMT - 6 Hours
Goto page Previous  1, 2
Page 2 of 2

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum

Remove cookies set by this forum

Search online dictionaries
(Powered by OneLook® Dictionary Search)
Enter word or phrase:
Enter a word to search for dictionary web sites that include that word.
Enter a pattern consisting of letters and wildcards to search for words.
Valid wildcards are * (matches multiple letters) and ? (matches one letter).
Locations of visitors to this page


Powered by phpBB © 2001, 2005 phpBB Group
IP Country Flag 2.9.6b © 2005, 2008 - 3Di (aka 3D)

Copyright 20052017 perskyfarms.com, All Rights Reserved

Copyright Notice: The material on this site is copyrighted by perskyfarms.com, and it is protected from unauthorized copying and dissemination by United States copyright law, trademark law, international conventions, and other intellectual property laws. This copyright protection also extends to any and all images, found on any and all pages of this site.

Please contact us at this address for permission, if you wish to use any material on this website for any commercial or public purpose.

We have made a good faith effort not to violate any copyright. If we have unknowingly done so, please contact the site administrator, at this address, and the issue will be promptly corrected.

Disclaimer: The information contained within this site is intended solely for general educational purposes, and is not intended, nor implied, to be a substitute for professional medical advice relative to your specific medical condition or question. Anyone who chooses to use any information found here, does so at his or her own risk. Always seek the advice of your physician or other health care provider for any questions you may have regarding your medical condition. Only your physician can provide specific diagnoses and therapies. By using this site you agree to the following terms and conditions:

Certain members of this discussion board are practicing medical professionals. They are not here to offer medial advice, they are here because they have been diagnosed with microsopic colitis, and they are interested in sharing their own personal experiences concerning the disease, and learning from others in all walks of life, who also have to deal with these issues. If you have any questions or concerns regarding your health, you should consult with your own doctor, or medial professional.

If you think you may have a medical emergency, call your doctor, or 911, immediately. The members of this board, regardless of whether or not they are medical professionals, cannot respond to issues requiring urgent medical attention. Please note that no legal action can be taken by any user of this site, as a result of any information found here, and that none of the parties involved, neither individually, nor collectively, nor the owner of this site, can be held responsible for any information offered in the course of discussions, regardless of circumstances, whether those discussions are in a public or private form, and regardless of whether of not any of the parties involved are professionals. Remember that this discussion board is not intended to be a replacement for a consultation with your doctor or other medical professonal, it is intended as a sharing of knowledge and information from the research and personal experience of the members of this discussion board.

This site does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere on this site. Reliance on any information provided here is solely at your own risk.

Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery